I am a 60-ish married engineer that has dealt with moderate eczema my entire life, primarily through the use of topical steroids. In early 2012 things started going wrong, and this blog is a personal diary of my journey through Topical Steroid Withdrawal, also known as Red Skin Syndrome, Topical Steroid Addiction, or Steroid Induced Eczema. I have been completely free from all steroids since July 9, 2013. Please see www.itsan.org for more info and feel free to post here!

Wednesday, October 14, 2015

Wednesday, October 14, 2015 - An Update Update

I'm not superstitious, but still I am hesitant to post that I am better, lest it jinx me. Oh well. I'm better! Not as good as I was before the 2 Year Turbo Flare, mind you, but I have been slowly improving in every way. I tried to repeat those same lovely pictures below.

A few other things have happened since the last post. First, my UV-B light box stopped working because the Super Secret Code that I get from the doc to get the machine to work expired. I called the UT Southwestern dermatology phototherapy department to get a new Super Secret Code and they told me I'd have to see the doc first. So in I went. She was as friendly and elusive as always. She was worried about infection, so took a swab from my legs and gave me an antibiotic prescription. I haven't heard back about the results, but I'm pretty sure I have not had an infection. She wants me to do "soak and wrap" or somesuch where I soak in the tub, then slather on vaseline and wrap myself with damp cloths. I said I'd do my best. The closest I've got is that I wear cotton gloves with nitrile gloves over them at night since my hands have been super crispy. I gave her the name of Dr. Rapaport's blog (www.red-skin-syndrome.com) and she promised to check it out. Honestly, a complete waste of time, except I did walk away with a new Super Secret Code and I am bathing myself in the lights from the gods again.

A few days later I woke up with my left eye glued shut and surrounded by little blisters. I've had eye infections before, but never with blisters, so i called my GP and he wanted to see me right away. So in I went. He was pretty darn sure I had shingles. Damn, talk about adding insult to injury. He gave me Valtrex and sent me to an ophthalmologist right away as he was concerned the shingles might affect my eyeball. So in I went. The optho-doc confirmed the shingles diagnosis and tested my eyeballs for glaucoma and they are fine. I was happy about that as I have heard that long term steroid use can cause eye problems.

When I got home I immediately looked up photos of shingles around the eyes and by golly, that's exactly what it looked like. I crossed "get shingles" off my bucket list and resigned myself to added misery. One thing I learned about shingles is that it is the chicken pox virus (which I had as a kid) that lives in the nervous system. The nervous system is split into right and left sides, so if shingles crops up, it is virtually always on one side of the body only. Well, the next morning I woke up, un-welded my left eye and checked myself in the mirror. After the initial horror I noticed something interesting: I had blisters showing up on the right side! Yay! No shingles, just another symptom to add to the TSW symptoms list. Over the next few days the infection and blisters went away and i am back to my former handsomeness.

Another exciting adventure: When Robin and I went on a cruise last spring I noticed my skin felt better after being in the ocean. So, a few months back I bought an Intex Purespa inflatable hot tub (about $330 on Amazon) with the idea that I would reproduce ocean water. I did some research and to duplicate the saltiness of the ocean i would need to add 60 pounds of salt to the 200 gallon hot tub. I ordered Pacific Ocean sea salt from Amazon and in it went. It was awesome. Nothing like 104 degree bubbling ocean water to sooth the itch and make me feel normal. Well... a couple weeks went by and other than having to replace skin-flake-plugged hot tub filters all the time I was really enjoying the ocean environs. Then the tub sprung a leak. I went out to discover that the tub had deflated and dumped about 100 gallons of salt water into the yard. Over the next couple days two nearby bushes looked completely dead and two big crepe myrtle trees were very sick, shedding brown leaves all over the place. Intex, bless their hearts, immediately agreed to replace the tub gratis, although it took like 4 weeks to get it. In the meantime the trees recovered. The bushes are toast.

Oh, and one bright spot during my Turbo Flare: My tastebuds have been messed up during TSW, but for some reason during the height of the flare certain foods tasted especially yummy. Apple juice was like nectar from the gods and root beer floats were like a party in my mouth. I was really thirsty so I downed gallons of apple juice and went through cases of A&W Root Beer and many tubs of Turkey Hill Natural Vanilla Ice Cream. I still managed to lose 20 pounds (or about 1.5 stones for 9 kilograms for you "furners") without trying. I've noticed some weight increase just in the last few days which makes me sad and happy at the same time, as it means I will likely return to my former "stocky" build but also means my Turbo Flare has well, lost it's turbo.

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"Addiction to (Topical) Steroids is a serious problem which reaches tragic proportions in some cases. It is more common than realized, sly and seductive and will be prevented only when the physician becomes as impressed with the capacity of the steroids to do harm as they are with their power to suppress, not cure, virtually any inflammatory disorder." - Dr. Albert M. Kligman M.D. Ph.D. and Dr. Peter J. Frosch M.D., International Society of Topical Dermatology Journal, 1979